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Saturday, March 27, 2010

Last Monday I was in Wal-Mart, and as I mulled over the reasoning behind putting no bake cheesecake in the baking aisle, my cell phone rang. It was my oldest son, Eric.

After our greetings, he asked, “Do you remember Pam, the woman you stopped to help after she hit the deer that time?”

“Sure,” I said. Several years ago, on the drive to visit Jim in the nursing home, I was following a car that was going the same speed. I thought about passing, but decided to drop behind instead. Soon, I heard a loud pop and a deer went bouncing off the hood of the other car toward the road. Another loud thud and a deer went flying toward the ditch. Shattering glass sprayed in all directions. The car pulled to the side of the road, and I parked behind.

I was worried because a retiree from the company I work for had died after a deer came through his windshield. I ran to the driver’s door and asked the lady if she was okay. She assured me she was fine, but I stayed with her while we waited for the highway patrol.

She introduced herself as Pam, and we soon discovered she worked at the same dealership as my son. Now all these years later, Eric was calling to tell me that Pam had died the night before. “Isn’t she about my age?” I asked. How sad that the only time I had ever talked with her was the night she hit the two deer.

I always felt fortunate that I had never hit a deer considering how plentiful they are in Missouri. One morning a few weeks ago, I stopped while seven deer crossed the road in front of me.Just recently, my boss hit a deer in the company car and a few days after it was repaired, he hit another with his farm truck. I see deer all the time, but I’ve always managed to slow down and we’ve all gone safely on our way.

Later Monday night on the way home I was thinking about how old my car is getting and decided I needed to buy a new vehicle. This thought had no more crossed my mind when a deer jumped into the road, bounced off the pavement, and made a flying leap into my lane. I hit my brakes, but knew the deer and I were on a collision course. My car thudded into the deer and he careened across my hood. I had a close up view of the deer’s belly and expected him to come crashing through my windshield. Instead, he skidded across the hood and off the other side.

I pulled over to stop on a side road and immediately began to hyperventilate. With trembling fingers, I dialed a number on speed dial and told my friend what had happened. I got out of the car to survey the damage, and thankfully, a young man who lived in a house nearby came out with a flashlight to check on me.

After the highway patrol accident report, I drove my car home. It was missing a headlight and had a banged up hood. I wasn’t hurt, and although I can’t imagine he made it far, the deer had picked himself up and gone back into the field—makes me feel like I fought the deer and the deer won.

The adjuster at Farm Bureau Insurance helped me find a rental car and get my car into the collision center. So now I’m tooling around in a luxury car, and expecting a deer to jump into the road at any time. Logically, I have to consider that until this week, I had driven for more than thirty years without hitting a deer, but now I’m a little paranoid that deer are lurking alongside the road waiting for me to drive by. The deer won’t recognize the rental car will they? How long will it take if I buy a new car before they know it is me driving it?

I guess my out-of-control thoughts are caused by my overactive writer’s imagination, or from watching too many episodes of Twilight Zone when I was a kid. That has to be all it is. Who ever heard of the “Revenge of Bambi”?

Saturday, March 20, 2010

As we wade through the quagmire of life, nostalgia can slam into us with the force of a tidal wave. During the hardest times, it is easy to suffer a case of the used to be’s or might have been’s.

Unlike physical life, your emotional well-being benefits more from the occasional tidal wave than the predictability of the tide. Occasional teary eyes about losses can be a healthy release, but constant sadness wears you down and takes a toll on your health as grief robs you of any good days.

Dementia can be a sad and lonely disease. During the ten years of Jim’s dementia, I lived only in the present. I learned to accept him as he was at that moment without comparing him to the man he had been, or worrying about the changes ahead. I didn’t want to become emotionally entangled in reminiscences of better times. While I was a caregiver, any other time, even rough ones, might seem like the best days of my life.

Now, nearly five years after Jim’s death, I don’t dread memories as much. They still sneak up on me and catch me off guard. Yesterday, I opened my patio door to let some fresh spring air into my home, and lit a candle to add a subtle berry scent. Lighting the candle made me pause as a rush of memories washed over me.

A few minutes later, I was putting away the nametag from the Alzheimer’s Action Summit and a basket with Jim’s driver’s license and old eyeglasses caught my attention. I picked up the license and looked at his picture, saw his vital statistics, and noted with sadness that the license expired in 1998. When the picture was taken we didn’t know Jim would develop dementia. Jim is gaunt in the photo, and I remember how concerned we were for him at the time. Inexplicably, he had gone through a period of weight loss, and my heart ached when I held him in my arms and could feel his ribs.

It is strange how some of the smallest routine moments can catapult us into another day or time of our lives. In retrospect, your recollections may be dominated with only good, or entirely bad, memories rather than embracing life’s balance. If you remember only the bad, you let past failures or traumas ruin your present. If you remember only the good, you lose the value of lessons learned and will repeat the same mistakes. Memories, like life, need balance.

Looking back at your life is like looking at a picture of a scenic landscape. A gnarled, barren tree may make the picture more appealing than perfection. You don’t feel sorry for the tree—you just see it as a natural development of time and weather.

We all develop our own version of gnarled trees. It may be the result of hard economic times, poor health, addiction, broken relationships, death, or a myriad of calamities.

Sometimes an entire forest is decimated by a wildfire, and we see only smoldering remains of a previously lush, living landscape. The circle of life embraces us and gives us comfort even when we seem to be surrounded by charred ruins. After the healing power of time, shoots push through the soil, and fast growing trees and shrubs cover the blackened earth.

Part of the secret of letting go of the past is to acknowledge you can’t go back and change what has already happened. You don’t need to long for how your life was at one time, or regret how different your life could have been if you had made better choices. You can only move forward with confidence that the best days of your life are ahead of you, and the best one of all is today.

Saturday, March 13, 2010

Once again I made my annual pilgrimage to Washington, DC, and joined other advocates to bring our message to Capitol Hill. This year my friend, Cindy, and my granddaughter went with me. We went a few days early to visit the magnificent museums and monuments scattered throughout our capitol city.

Of all the sights in DC, the Vietnam Memorial touches me the most. About twenty years ago, Jim and I went to Washington, DC, on a business trip. Jim had seen the memorial on TV, and being a Vietnam veteran, it was at the top of his “must see” list. We walked hand-in-hand past the memorial that first time, tears streaming down our faces, overwhelmed at the sight of the Wall. The simple, yet majestic, glossy, black granite wall is inscribed with 58,261 names, each representing a life lost.

For the past ten years, I’ve made the trip to Washington, DC, without Jim, but I feel his presence with me, especially when I visit the Wall. Each time I touch its surface, the tears flow for all those lives lost, and for others destroyed by Vietnam—for the wounded in spirit as well as in body.

Vietnam was a burden that rested heavy on Jim’s soul. He struggled with depression verging on despair. Still, he found solace and healing through his musical talent. The most unfortunate symptom of Jim’s dementia was when his smooth singing voice was silenced. I became an Alzheimer’s advocate and his voice by proxy.

A record number of advocates attended the Alzheimer’s Action Summit this year. An alarming number of those with the disease have younger onset. It may be that younger people are more motivated to take on the insurmountable challenges of a disease that many of them never imagined would affect them.

Each of us comes to Washington, DC, from different backgrounds with different stories, or experiences. We came with "One Voice" and a focused approach to bring Alzheimer’s out of the shadows and into the light—hopefully, the spotlight. While mortality from stroke, HIV, heart disease, prostate and breast cancer has decreased in the period of time from 2000-2006, Alzheimer’s deaths have increased by 46.1%. What is the difference? We have focused on those diseases and funded research to find effective treatments.

Alzheimer’s funding in 2009 was $469 million, plus $77 million from the American Recovery and Reinvestment Act. This is far short of the billions spent each year on other major diseases. Without the investment in research, we will never have the payout of success.

Each of us can make a difference by becoming an advocate. If you weren’t able to make it to the Summit, you can still add your voice to the more than 600 advocates who stormed Capitol Hill with the Alzheimer’s message. Pick up the phone and call, or email your legislators, to ask them to support and co-sponsor:

· The Alzheimer’s Breakthrough Act (S. 1492, H.R. 3286). Alzheimer’s research would become a priority of the National Institutes of Aging and funding established at $2 billion. It would also include a study of the unique problems facing those with younger-onset dementia.

· Alzheimer’s Detection, Diagnosis, Care, and Planning Act will help expedite diagnosis and bundle services to ensure care planning to maintain quality of life. It is estimated that currently less than half of the people with dementia have been diagnosed.

· The National Alzheimer’s Project Act (S. 3036, H.R. 4689) would create a National Alzheimer’s Disease Plan. Currently 5.3 million Americans have Alzheimer’s and without a cure as many as 16 million will have the disease by mid-century.

Alzheimer’s is an expensive disease. Medicare costs are six times higher for a person with Alzheimer’s, Medicaid is a staggering nine times higher, and private insurance costs are 26% more. The monetary cost doesn’t even come close to the emotional toll this disease takes on the entire family when a beloved relative develops dementia. Share your experiences so that our voices will be heard.

Monday, March 8, 2010

Tonight at the Alzheimer’s Action Summit Candlelight Vigil more than six hundred voices sang “We Shall Overcome.” Accompanied by an acoustic guitar and with candles held high, the sheer grit and determination of the advocates makes overcoming Alzheimer’s seem more a palpable possibility that just a lofty goal.

Steve spoke of living with Alzheimer’s. How we need to use our voices to deliver a firm message that Alzheimer’s is the seventh leading cause of death. It is time to stop accepting crumbs that fall from the table. The time of polite asking has come to an end.

David Hyde Pierce motivated us to make our VOICE heard at the Capitol, the White House, and across the nation. Those of us at the Candlelight Rally were joined by more than 10,000 virtual candles.

This is the tenth time I’ve lit my candle at the vigil. Something seemed different this time. Maybe it’s something as subtle as the name change from Public Policy Forum to Action Summit. Maybe it’s because we didn’t just have a vigil, we experienced a rally. Whatever the difference, the determination and spirit of this group makes me think we really shall overcome.

Friday, March 5, 2010

Coming from rural Missouri I don’t have many occasions to use public transportation. A trip to the Alzheimer’s Action Summit gave me a chance to get more than my fill of it.

It seems like things change all the time, but it's never for the better. An early morning flight used to mean you woke up early and headed for the airport. (Well, there was that one time when Jim dropped me off and the flight started boarding before he got back from parking the car.) Now, it means you need to find a place to stay the night before so you can get to the terminal on time. You have to allow extra time to be scrutinized.

I am not the least bit nervous about flying, but things can go awry in a hurry. Once you’ve done everything you can—stay the night, get up at an obscene hour, and hop in the hotel van hours ahead of time. The hotel driver makes the trip several times a day, so you just leave your timely arrival in his capable hands. The sign plainly says, “Midwest—Terminal A.” The driver whipped around the terminal. “Did I miss it?” he asked.

“I didn’t see it either,” I said. Of course, I was depending on him to see it. My friend, Cindy, and my granddaughter were in the back seat and they didn’t see it either.

We looped around the circle again. This time we stopped in front of another airline and Cindy jumped out to ask them where to find Midwest. “They moved to Terminal C yesterday, but they haven’t changed the sign.”

Our driver drove us to Terminal C and, sure enough, there they were. We checked in and paid $20 for every bag we checked. After having our belongings X-rayed, and thankfully not our bodies, we were seated in the holding area and hooked up to the Internet in no time.

Eventually, the pilot showed up. “No one told me we had changed terminals,” he said. Ooops, shouldn’t he have gotten the memo even if the passengers hadn’t? I don’t think he was too happy. Minutes before the boarding call, a flight attendant showed up.

We boarded and prepared for take-off. The pilot taxied, and taxied, and taxied. We were beginning to think he was going to drive to DC. I figured the control tower didn’t know what the heck Midwest was doing at Terminal C either. It is possible that the kid at the mike didn’t want to clear an unauthorized plane. We thought maybe the pilot went back to Terminal A to take off on familiar turf.

In the air we get the bad news that we will get only complimentary drinks—no snacks and no chocolate chip cookies before 10 a.m. I was pretty coffee logged so decided to go with juice. Tomato juice sounded good. “Do you want plain or spicy?” the flight attendant asked.

“Might as well have spicy,” I said. “I’m sure I’ll have heartburn anyway.”

“Do you want some lime in it?”

“Sure, sounds good to me.”

She poured a small glass and handed it to me. Wow. It was really hot, but it was tasty. And the lime was a great touch.

Later the flight attendant brought me the rest of the can. “No one else wanted any,” she said. A whole plane full of people, and I’m the only one that likes spicy tomato juice? The spicy tomato juice was Bloody Mary mix. No wonder the lime tasted so good in it.

When we got to DC, the plane looped in a big circle in one direction, reversed the circle in the other direction. Round and round we go. Who knows what was going on? Finally we landed and were on our way to the hotel.

Later in the day the big adventure was riding the subway to see the sites. With no help in sight, a gaggle of tourists tried to decipher the machines. After several false starts, we finally bought day passes and headed out.

While we waited for the first subway, a recorded voice explained that unlike elevator doors, subway doors will crush you like an aluminum can if you get caught in the door. Well, she didn’t say it in those exact words, but that’s what she meant. All I can say is the announcement put the fear of God in me. I made sure my granddaughter was between Cindy and me because I wanted to make sure that if one of us had to abandon getting on a car my granddaughter would be with one of us and not standing alone on the platform.

After a day of ankle-swelling, aching-back walking, and riding on crowded subway cars, we passed by the same set of machines. Cindy tried to cash in her ticket, but couldn’t figure it out while at the same time trying to explain to a bemused tourist how to buy a ticket. He just wasn’t getting it. I put my ticket in the machine and it said, “See a manager.” Yeah, right. I’m not so sure there is a manager, much less actually finding a human who fit that description.

“Here,” I said, handing the tourist my pass. “Take this. It’s good for the rest of the day.” I knew that with my aching feet, they couldn’t pay me to get back on that subway.

For sure, traveling is always an adventure. At least with the afternoon ride home, we don’t have to get up early and better yet, Midwest serves those delicious chocolate chip cookies. I don’t think I’ll be having any Bloody Mary mix with that. That would be taking adventure to a whole new level.

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Early Onset Alzheimer’s

This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

In her Early Onset Alzheimer’s blog, she teaches readers not just how to manage such a frightening condition, but also how to live life to the fullest. Her passion for helping others – showing everyone that life with Alzheimer’s is worth living – is a tremendous gift. Thank you, Linda!

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Early Onset Blog has received several blog awards. Due to new Google regulations, the links had to be removed. Past awards have included the #1 Health Blog , Top 10 blog in 2010, Top 25 Blog award in 2010, and a Top 50 award in 2012. We appreciate the recognition, but also understand the need to remove the links.

I went to sleep around midnight and woke up at 4:00 a.m. I tossed, turned, read, tossed, turned, and read some more. Finally more than t...

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Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

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